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My name is Aileen and I have been undiagnosed for over 5 years. It is such a long (and tiring) story, as many of you understand. I have never participated in any chat rooms or forums before so I don't know all of the protocols. I came across the forum when looking for information on Dr. Thomas Bolte. I have been so thankful to read all of your stories . . . to have others understand the frustrations of trying to get help from the medical community.
My main issue is pain. It began in my right mid-abdomen going straight through to my back. I also had pain on the right side of my pelvis and going down my right leg.In addition I felt light headed and unable to concentrate/focus. There was a lump on the right side of my abdomen. That was April 2005.
I went to see my primary care doctor. After tests they found a cyst on my right ovary- she was sure that was the problem. When I went to the OB/GYN the cyst had ruptured on it's own. They thought maybe endometriosis. I had an exploratory laparoscopy- my GYN found some endometriosis, mostly on the left side. She removed that by laser and also removed my appendix. Didn't help. That was 10/2005.
Went to more Dr.'s. Had more tests. They thought physical therapy would help. I went to three different physical therapists over a year period. I knew i had a lump but I couldn't always find it to show the Dr.'s but eventually it was more obvious. The long story short is that it was my right kidney. It had come unattatched. When I stood up it decended, but when I was laying down it went back into the correct position- so it didn't show up in CT scans, IVP's etc. All the symptoms matched, I was sure this was going to take my pain away. I had surgery to reattatch it. When I started to recover from the surgery I knew it hadn't taken the pain away. That was February 2008.
I got depressed for a while after that and didn't do anything to find out about what was causing the pain. I took about 4 months off. Then started back at it. Since then I have been going to physical therapy (visceral manipulation) and taking meds for the pain. I went to Cleveland Clinic in April and that was a huge disappointment. Tomorrow I leave to go to New York. I have an appointment with a pancreas specialist and Dr. Bolte. It is about a 12 hour drive. I am hopeful for some real answers, although reserved.
It has all been getting worse. At the beginning the pain was intermittent. Now it is constant and much stronger. I had to increase my meds about a month ago. For the longest time I felt like a healthy person with pain, but now I feel sick. I have no energy and even though it doesn't really help to lay down that's all I really want to do. It is tough because I have a 10 year old daughter and a 7 year old son. I just want them to have a fun summer break from schoool and I want to be able to play with them.
Thank you for reading my post. And thank you for being here. No one else understands really. I will try to post what I call my "medical resume" on the Undiagnosed Help section.
Aileen
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